Privacy Ethics

WPF filed comments today asking The National Institutes of Health to make changes to its draft Genomic Data Sharing Policy for sharing, for research purposes, of large-scale human and nonhuman genomic data. The World Privacy Forum comments focus on human genomic privacy. “We are most concerned in our comments that the NIH find a full range of privacy protections for genomic data to be used for research. We are interested in a full arsenal from encryption to certificates of confidential to civil and criminal penalties for misuse. Consent — as alluring as the idea is — cannot by itself carry all of the privacy water,” said Pam Dixon, executive director of the World Privacy Forum.

WPF on privacy and consumer trust — Pam Dixon is speaking on a panel on privacy and trust at Marketing Science Institute in Boston. The panel, led by John Deighton of the Harvard Business School, includes experts from EPIC, the DAA, and CBS.

WPF filed comments with the Presidential Commission for the Study of Bioethics today urging the Commission to recognize the need for enhanced genetic privacy protections in a digital world. WPF noted that “The increasing identifiability of genetic data presents major privacy issues for research activities that must be acknowledged and addressed.” WPF suggested four key ways that Certificate of Confidentiality programs could be enhanced for privacy protection, and urged the Commission to speak out about the importance of protecting patient privacy in research activities involving genetic information. “The Commission should advocate providing patients with reasonable controls over research uses of their data as electronic records develop and spread throughout the health care system.” Public comments may be submitted to the Commission until May 25, 2012.

The World Privacy Forum appreciates the opportunity to comment on the issue of facial recognition pursuant to the FTC Face Facts Workshop held on December 8, 2011. [1] The World Privacy Forum spoke on Panel 4 of the workshop, and those comments are already on the record. In these written comments, we would like to submit several key documents for the record and reaffirm several ideas from the workshop. The documents we are including as part of these comments include the World Privacy Forum’s groundbreaking report on digital signage, The One Way Mirror Society. Also included as part of these comments are the consensus privacy principles for digital signage installations that were signed by the leading US consumer and privacy groups.

Common Rule | Health Privacy — The World Privacy Forum filed extensive comments with the US Department of Health and Human Services about its proposed changes regarding the rules governing human subject medical research. In the comments, WPF noted that the HHS approach to privacy for research subjects was incomplete and did not use all Fair Information Practices. WPF strongly urged HHS to revise its proposal on a number of issues, including consent and the use of biospecimens in research. The World Privacy Forum is urging HHS to acknowledge that the realm of health data that is truly non-identifiable has shrunken remarkably, for example, biospecimens with DNA cannot be considered non-identifiable anymore. “In our comments, we are requesting that HHS give individuals the opportunity to make choices about the use of their own health data and specimens,” said Executive director Pam Dixon. WPF also stated in its comments that “A central database with identifiable information about participants in human subjects research is a terrible idea.” (See p. 21 of WPF comments.)